The fibromyalgia diagnosis: hardly helpful for the patients? A qualitative focus group study

Abstract

Objective: To explore experiences and consequences of the process of being diagnosed with fibromyalgia.

Design: Qualitative focus-group study.

Setting: Two local self-help groups.

Subjects: Eleven women diagnosed with fibromyalgia.

Main outcome measures: Descriptions of experiences and consequences of the process of being diagnosed with fibromyalgia.

Results: Many participants had been suffering for years, and initial response of relief was common. For some, the diagnosis legitimized the symptoms as a disease, for others it felt better to suffer from fibromyalgia rather than more serious conditions. Nevertheless sadness and despair emerged when they discovered limitations in treatment options, respect, and understanding. Some patients keep the diagnosis to themselves since people seem to pay no attention to the name, or blatantly regard them as too cheerful or healthy looking. The initial blessing of the fibromyalgia diagnosis seems to be limited in the long run. The process of adapting to this diagnosis can be lonely and strenuous.

Conclusion: A diagnosis may be significant when it provides the road to relief or legitimizes the patient's problems. The social and medical meaning of the fibromyalgia diagnosis appears to be more complex. Our findings propose that the diagnosis was hardly helpful for these patients.